RESEARCH ARTICLE Open Access

The challenge of consolation: nurses’experiences with spiritual and existentialcare for the dying-a phenomenologicalhermeneutical studyKirsten Anne Tornøe1,2,3*, Lars Johan Danbolt2,3, Kari Kvigne4,5 and Venke Sørlie1

Abstract

Background: A majority of people in Western Europe and the USA die in hospitals. Spiritual and existential care isseen to be an integral component of holistic, compassionate and comprehensive palliative care. Yet, several studiesshow that many nurses are anxious and uncertain about engaging in spiritual and existential care for the dying.The aim of this study is to describe nurses’ experiences with spiritual and existential care for dying patients in ageneral hospital.

Methods: Individual narrative interviews were conducted with nurses in a medical and oncological ward. Datawere analyzed using a phenomenological hermeneutical method.

Results: The nurses felt that it was challenging to uncover dying patients’ spiritual and existential suffering, becauseit usually emerged as elusive entanglements of physical, emotional, relational, spiritual and existential pain. Thenurses’ spiritual and existential care interventions were aimed at facilitating a peaceful and harmonious death. Thenurses strove to help patients accept dying, settle practical affairs and achieve reconciliation with their past, theirloved ones and with God. The nurses experienced that they had been able to convey consolation when they hadmanaged to help patients to find peace and reconciliation in the final stages of dying. This was experienced as rewardingand fulfilling. The nurses experienced that it was emotionally challenging to be unable to relieve dying patients’ spiritualand existential anguish, because it activated feelings of professional helplessness and shortcomings.

Conclusions: Although spiritual and existential suffering at the end of life cannot be totally alleviated, nurses may easesome of the existential and spiritual loneliness of dying by standing with their patients in their suffering. Further research(qualitative as well as quantitative) is needed to uncover how nurses provide spiritual and existential care fordying patients in everyday practice. Such research is an important and valuable knowledge supplement totheoretical studies in this field.

Keywords: Nurses’ challenges, Spiritual, Existential, Care, Dying patients, Hospitals, Phenomenologicalhermeneutical

* Correspondence: Kirsten.Tornoe@ldh.no1Lovisenberg Diaconal University College, Lovisenberg gt. 15B 0456, Oslo,Norway2MF, Norwegian School of Theology, Gydas vei 4, Majorstuen 0302, P.O. Box5144, Oslo, NorwayFull list of author information is available at the end of the article

© 2015 Tornøe et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Tornøe et al. BMC Nursing (2015) 14:62 DOI 10.1186/s12912-015-0114-6

BackgroundThe evidence on death and dying in Western Europeand the USA suggests that a majority of people die inhospitals [1]. In spite of this, cure oriented hospital envi-ronments tend to focus on the physical aspects of illness,even though clinical research and experience shows thatdying patients are confronted with complex and uniquechallenges that threaten their physical, emotional, andspiritual integrity and wellbeing [1–5]. In times of ill-ness, what might loosely be called spiritual, meaning,and identity issues may come to the fore, even when re-ligion and spirituality have not previously been of signifi-cance [6]. Drawing on Gibson et al. [7], Swinton andPattison [6] maintain that the therapeutic focus on pa-tients’ spiritual and existential issues has been shown tobe preventative against depression, loss of self-value andthe desire for suicide among people with terminalillness.When the brutality of illness outstrips the power of

medical technology, part of the fallout lands squarely onfront–line clinicians [8]. As the largest professionalgroup, registered nurses play an important role in hos-pital care for the dying [1]. Boston et al. [9], point outthat dying patients frequently experience severe spiritualand existential anguish which according to Bruce et al.[10], can be described as a condition where morbid suf-fering may include concerns related to hopelessness, fu-tility, meaninglessness, disappointment, remorse, deathanxiety and a disruption of personal identity. Dying pa-tients’ spiritual and existential suffering may have a pro-found and devastating impact on the wellbeing of familymembers because it prompts their awareness of loss,which may trigger grief, depression and anxiety [11, 12].In spite of this, health care professionals tend to over-look family needs and family members are often referredto as “hidden patients” [11]. It is therefore crucial thatnurses are able to discern spiritual and existential dis-tress and its effects on overall family health; and thatthey are able to integrate a family perspective in theirspiritual care interventions [11].Kisvetrova et al. [13] point out that the purpose of

spiritual and existential support is to alleviating dyingpatients death anxiety and distress, and that spiritualand existential care interventions may include religiousas well as spiritual and existential aspects. According tothem, spiritual and existential care interventions involveconveying empathy, active listening, being present withpatients, helping patients to accept their thoughts andfeelings around death and dying, showing respect andsupporting patients’ dignity. They also emphasize theimportance of creating a compassionate and caring en-vironment to bring hope, help patients to deal with thereality of death and to support their spiritual well beingin the terminal stage of life [13].

According to Balboni et al. [14], spiritual care is asso-ciated with key patient outcomes, including patientquality of life, satisfaction with hospital care, increasedhospice use, and decreased aggressive medical inter-ventions and medical costs. It is therefore vital thathospital nurses are able to provide spiritual and exist-ential care for dying patients. However, several studiesreveal that this is still a major challenge for many.While maintaining curative responsibilities for patientswith life threatening illnesses, nurses must also be ableto address the needs of the dying as part of their dailywork [1, 2, 5, 15].In light of the growing body of palliative care research,

spiritual and existential care for the dying is seen to bean integral component of holistic, compassionate andcomprehensive palliative care [4, 16–19]. Nevertheless,research also reveals that spiritual and existential care isfrequently overlooked in palliative care [16]. Patientswith advanced illnesses report that their medical care-givers infrequently provide spiritual care [14]. Accordingto Udo [20], several studies show that many patients aredissatisfied with the emotional and existential supportthey are given. Even if they are satisfied with their med-ical and physical care, seriously ill patients often refrainfrom discussing their spiritual and existential thoughtswith nurses because they do not feel that nurses ac-knowledge this need, in addition other studies show thatnurses often feel unprepared to meet with patients fa-cing spiritual and existential issues at the end of life,which can be a barrier against conducting spiritual andexistential care for the dying [20–24]. According toHenoch and Danielson [25], there is a gap in the re-search literature about how patients’ existential well-being may be best supported by nurses and other healthcare professionals in everyday practice.

AimThe aim of this study is to describe nurses’ experienceswith spiritual and existential care for dying patients in ageneral hospital.The nursing literature interprets and applies the terms

“spiritual” and “existential” care in different ways, whichsuggests that these terms are open to interpretation. Sev-eral scholars support this view [6, 23, 26–29] and ac-cording to them, there seems to be no single agreeddefinition on spiritual and/or existential care in nursingliterature. In line with these scholars, this study hasadopted a pragmatic and functionalist epistemologicalpoint of departure targeted at the practical implicationsof the nurses’ spiritual and existential care experiencesrather than the ontological questions related to the con-ceptual framework. Based on our pragmatic point ofview we have chosen to use the term “spiritual and exist-ential care” consistently throughout this study.

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MethodDesignThis is a qualitative study. As such, its quest is not forobjectivity and explanation as in natural sciences. Rather,the quest lays in seeking for the meanings and deeperunderstandings of the participants’ lived experience, andthe subjective meanings of their experiences [30–32].Henceforth, it is not reasonable to discuss the conceptsof validity, reliability and generalizability in their trad-itional senses because the few informants chosen inqualitative research projects are not sufficient to allowconclusions to be generalized back to the populationfrom which they were drawn. However, they do insurestrength and representativity in relation to transferabil-ity, as they permit an in-depth insight into the phenom-ena under study. Qualitative projects can therefore bestated to show a high content validity. This means thatthere is a high degree of detail in the data. However, dueto the lack of numerical representativity it is not possibleto make inferences about the relative or absolute inci-dence of the observed phenomena in the backgroundpopulation [33].The study was conducted using a qualitative phenom-

enological hermeneutical interpretation method devel-oped by Lindseth and Norberg [34] which is inspired byRicoeur’s phenomenological hermeneutical interpret-ation theory [31]. Lindseth and Norberg’s [34] interpret-ation method has proven to be suitable for illuminatinglived experience in interview texts [34, 35] and has beenused in several palliative care studies [15, 36–38].According to Ricoeur [31], human action can be

understood as discourse and interpreted as text, when ithas been objectified and fixated through writing. Whenspoken discourses, such as research interviews, are writ-ten down, the texts (in this case the interview tran-scripts) become “autonomous” with respect to theinterviewees’ intentions [31, 39, 40].Ricoeur [31] points out that the fixated discourse and

its meaning becomes distanced from the speech event.As such, the text becomes “decontextualized” from thespeech event and its social and historical conditions.This opens up the text to an unlimited series of readings[31], where the readers will experience a need to recon-textualize and appropriate the text, − to familiarize themselves with the text and make it their own.Ricoeur [31] states that there exists a dialectic relation-

ship between distanciation and appropriation in the in-terpretation process: “To make one’s own what waspreviously foreign remains the ultimate aim of all her-meneutics….. This goal is achieved insofar as interpret-ation actualizes the meaning of the text for the presentreader” [31]. For Ricoeur [31], interpreting a text in-volves moving beyond understand what it says (its sense)to understanding what it talks about (its reference).

Geanellos [41] points out that Ricoeur’s interpretationtheory has two stages: (i) explanation, − or what the textsays and (ii) understanding, or what the text talks about.While explanation is directed toward analysis of the in-ternal relations of the text (the parts) understanding is di-rected toward grasping the meanings the text discloses(the whole in relation to the parts) In this way, interpretiveunderstanding goes forward in a continual movement be-tween the parts and the whole allowing understanding tobe enlarged and deepened [41]. “Ultimately the correlationbetween explanation and understanding, between under-standing and explanation is “the hermeneutic circle” [39].For Ricoeur [31], the sense of a text is not behind the textbut in front of it. It is not something hidden, but some-thing disclosed: “What has to be understood is not the ini-tial situation of discourse, but what points to a possibleworld….. The dimensions of this world are properly openedup and disclosed by the text” ([31] p. 87–88).Methodologically distanciation and appropriation

allow researchers to move beyond the notion that onlythe research participants’ understanding is meaningfuland or correct. It also allows the interpreters to interpretthe same text faithfully, yet somewhat differently be-cause it is acknowledged that texts have many meanings[41]. For Ricoeur [39], all interpretive activity involves adialectic between guessing and validating. The inter-preter must make an educated guess about the meaningof a part and check it against the whole and vice versa.Hence, guessing and validation are circularly related assubjective and objective approaches to the text [39]. Al-though there is always more than one interpretation,Ricoeur [39] emphasizes that all interpretations are notequal and that one must try to find the most probableinterpretation.

ParticipantsSix registered nurses, working in a combined medicaland oncological ward in a general hospital in a ruralNorwegian town, were interviewed. This ward had pa-tients with palliative; as well a curative needs so thenurses were familiar with the challenge of providingspiritual and existential care for the dying as part of theirdaily work.The head nurse was contacted to obtain permission to

conduct the study. She was also asked to inform all ofher nurses about the study and to distribute a formal re-quest/ information sheet on behalf of the authors. Thefirst six nurses who signed up for the interview partici-pated in the study.The inclusion criteria were that the nurses were inter-

ested in palliative care, had a variety of experiences andhad spent time in this work. The participants were be-tween the ages of 37 and 61 years, with nine to twentyone years of nursing experience. Four of the six

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participants had degrees in oncology nursing and pallia-tive care.

Ethical considerationsThe study was conducted according to the Helsinki declar-ation [42, 43]. Approval was obtained from the NorwegianSocial Science Data Service (NSD), project number 29973and participants gave their written consent.All of the participants had received a formal request/

information sheet from the authors prior to the inter-views. The information sheet described the study’s aimand background, emphasizing that participation was vol-untary and that the participants were free to withdrawfrom the study at any given time, during or after theinterview. It also explained that the interviews would betranscribed verbatim and that individual identifierswould be removed from the transcripts. The informationsheet underlined that all audiotapes and interview tran-scripts would be stored in a password-protected com-puter and that the participants’ information would onlybe used to conduct this study and that all informationwould be deleted as soon as the study was completed.The information sheet also emphasized that the infor-mation would be deleted immediately if the participantwished to withdraw his or her consent at any given time.The interviews took place in a secluded and quiet

meeting room outside the ward, in order to avoid inter-ruptions and to protect the participants’ confidentiality.Before each interview the first author introduced her-

self and repeated the written information that the partic-ipants had received. She especially emphasized themeasures that were taken to ensure the participants’confidentiality and anonymity. She also explained herrole as the researcher and what she expected from theparticipants and encouraged the participants to askquestions about the study and the interview procedure.Personal information about each participant was ob-tained and written down. The first author emphasizedthat this information would be kept under lock and key.Written consent was then obtained from eachparticipant.

Data collectionThe interviews took place in August 2014 and were con-ducted in a hospital meeting room during the nurses’working hours. The first author conducted the inter-views, which lasted approximately one hour. She alsoaudiotaped and transcribed the interviews verbatim. Theinterview strategy was designed as a narrative approachwith one open-ended question, followed by clarifyingquestions when necessary:

What are your experiences with providing spiritualand existential care to dying patients?

This choice was based on the underlying presuppos-ition, that the perspective of the interviewees is best re-vealed in narratives where they use their spontaneouslanguage to talk about events [44, 45]. No definitions ofspiritual and existential care were introduced at thecommencement of the interviews because we wantedthe participants to talk freely about what they consideredas spiritual and existential care. The aim of the inter-views was to obtain as many rich narratives as possible,minimally interrupting the nurses’ narrative flow and re-flection by tying questions and comments to the infor-mants’ responses and repeating their words wheneverpossible [46]. In addition, the first author followed up onthe themes that the informants focused on in order toobtain the meanings of their narratives [47].

Data analysisData was analyzed using Lindseth & Nordberg’s [34]phenomenological hermeneutical method for research-ing lived experience where each interview is lookedupon as a text. In line with Ricoeur’s interpretation the-ory [31], Lindseth and Norberg’s interpretation method[34] implies a dialectic movement between the text as awhole and parts of the text and consists of three steps.The first step, which involved a naïve reading, consistedof an open-minded superficial reading where the textwas reread several times to grasp the meaning of the textas a whole. The aim was to gain access to the nurses’lived experience with spiritual and existential care. Thenaïve reading guided the structural analysis, which wasthe second step. The text was divided into meaning unitsthat were condensed into themes and sub-themes. Theobjective of the structural analysis was to explain whatthe text was saying. The themes and sub-themes are pre-sented in the results section. Finally, a critical compre-hension was developed where the text was read as awhole, taking into account the authors’ preunderstand-ing, naïve reading, structural analysis, previous researchand relevant theory [34, 35]. The critical comprehensionis presented in the discussion section.

RigourThe interview provided a large amount of in-depth in-formation about the meaning of the nurses’ lived ex-perience. A text may have more than one possibleinterpretation [34, 35]. Henceforth, the interpretationpresented in this study should be viewed as one of sev-eral possible ways to understand the nurses’ experi-ences. To ensure rigour all authors performedindividual naïve readings, which were then discussedbetween the authors. This served as a guide for the firstauthor who performed the structural analysis. Tostrengthen the credibility of the structural analysis, allauthors critically reviewed and compared the first

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author’s results in light of their naïve readings. The au-thors conducted a meeting to discuss the interpretationof the results. We found them to be consistent withour naïve readings. This strengthened the trustworthi-ness of the study.

Study limitationsNorway is becoming an increasingly pluralistic andmulticultural society [48]. However, the study was con-ducted in a rural Norwegian town where the majority ofthe population and all of the informants were ethnicNorwegians coming mainly from a secularized or trad-itional Norwegian church background. Therefore thenurses had limited experiences with spiritual and exist-ential care for patients from other ethnic backgroundsand/or religious traditions. Due to the study’s geograph-ical and cultural context the study is limited to thenurses’ experiences with providing spiritual and existen-tial care to ethnic Norwegian patients.

ResultsThree themes and six sub-themes from the structuralanalysis are shown in Table 1. Results will be presentedin the text below, including quotes to illustrate thethemes.

The elusive entanglement of sufferingThe nurses experienced that patients’ spiritual and ex-istential suffering emerged as subtle and somewhat elu-sive entanglements of physical, emotional, relational,spiritual and existential pain. The nurses related pa-tients’ spiritual and existential suffering to their pain,struggle and distress concerning reconciliation withtheir past, their loved ones, and the fact that their timewas running out. The nurses experienced that dying pa-tients and their families could become lonely and alien-ated from each other when they were unable to sharetheir burdens of fear, grief and sorrow. They saw thatpatients often were deeply anxious about how their

children and spouses would cope without them. Thenurses experienced that patients could express theiranxiety of dying as an existential fear of disappearing“into a black hole”. They also encountered patients whoexperienced spiritual and existential suffering becausethey thought God had given them illness and pain topunish them for their sins.

Uncovering spiritual and existential SufferingAccording to the nurses, spiritual and existential suffer-ing (which did not always include religious aspects)could emerge spontaneously. This could for examplehappen during physical care or any other moment, espe-cially when the nurses were able to convey that they hadtime to listen. The ability to zoom in on the fleeting mo-ments, when patients wanted and needed to talk wastherefore seen to be an essential skill.Initiating and engaging in conversations about how

patients experienced their situation proved to be animportant means to alleviate their spiritual and exist-ential suffering. Being able to pick up patients’ spirit-ual and existential suffering required “a fine tunedantenna”. The nurses emphasized that it was import-ant to pay attention to the patients’ energy levels andemotional states, neither forcing nor avoiding spiritualor existential conversations. The nurses emphasizedthe necessity of establishing trust and rapport beforethey attempted to inquire about patients’ spiritual andexistential needs. However once they had gotten toknow the patients, some of the nurses expressed thatthey could be quite frank with them: ”I never askabout these things without obtaining permission.”According to the nurse, she usually got permissionwhen she asked for it:

“Can I ask you a direct question? If the patient agreesI’ll ask questions like: How do you feel about dying?Have you spoken with your wife about your situation?- and so forth and so on.”

Spiritual and existential careAmbivalence and uncertaintyThe nurses had mixed feelings about providing spiritualand existential care, although they considered that itwas important. The nurses said they hesitated toinquire about patients’ spiritual or existential needs dueto lack of time, insufficient staff resources and the pos-sibility of being interrupted. However, they alsoreflected that they sometimes used this as excuses toavoid the challenge of talking with patients about spir-itual and existential concerns. The nurses did not con-sider themselves to be “very religious” or “veryChristian” as they put it, and they felt that religion wasa very private and personal matter. They were therefore

Table 1 Overview of themes and sub-themes that emerged inthe interview text

Themes Sub-themes

The elusive entanglementof Suffering

- Uncovering spiritual and existential Suffering

Spiritual and existentialCare

- Ambivalence and Uncertainty

- Facilitating Reconciliation and Communicationbetween Family members

- Unburdening Patients to facilitate a peacefulPassing

Conveying Consolation - Emotional Challenges

- Emotional Containers

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uncertain about how to address patients’ spiritual con-cerns, without imposing themselves on them. In spiteof their ambivalences, our results show that the nursesattempted to provide spiritual and existential carewithin their limited time and resources. The nurses feltthat alleviating spiritual and existential suffering was acomplex and challenging task, depending on the pa-tients’ family situation, social network, physical andmental condition, spiritual, religious and existential be-liefs and their ability to communicate.

Facilitating reconciliation and communication betweenfamily membersHelping patients and families to achieve reconciliationwas an important part of the nurses’ spiritual and exist-ential care. They placed great emphasis on encouragingfamily members to talk with each other in order to sharetheir grief, make their peace and say their goodbyes. Thenurses saw that patients occasionally tended to concealtheir impending death because they wanted to sparetheir loved ones. The nurses tried to urge these patientsto talk openly with their families:

“You’re really not sparing them you see, because theysense that something is wrong and they worry andwonder about what’s the matter with you! And besides,they want to help you if you’ll let them!”

The nurses offered to initiate and moderate familymeetings when they saw that families struggled to talk:

“Occasionally some patients and families need a littlepersuasion to talk with each other. Sometimes we canprovide that. But you have to tread carefully!”

When the nurses saw that a divorced single fatherspent all his energy worrying about how his teenage sonwould manage without him, they asked the patient if hewanted help to talk with his son and ex wife: ”He becameso touched and relieved that he started to cry!” The pa-tient became calmer after the family meeting because heknew that his ex wife would take care of their son. Thenurses frequently experienced that patients could be-come quite relieved when they were given the opportun-ity to express their feelings and talk about their worriesand concerns. However, the nurses also experienced thatsome patients did not wish to talk with them or anybodyelse, and they reflected that it was important to respectthe patients’ wishes.

Unburdening patients to facilitate a peaceful passingThe results show that several kinds of issues and con-cerns could exacerbate patients’ spiritual and existentialsuffering. It was therefore vital to uncover these issues

to provide relevant interventions. This is especially illus-trated in the nurse’s narrative about a young womanwho was dying of lung cancer. Sensing her anxiety, thenurse asked her what she thought about death. The pa-tient feared that she would just disappear into “a bigblack hole” and asked what the nurse thought aboutdeath: ”Isn’t there anything more afterwards?” The nursetried to relieve her anxiety by sharing her own hope ofreuniting with her loved ones: “I think they will be thereto greet and welcome me when I die”. This seemed tokindle the patient’s hope of reuniting with her diseasedfather: “Maybe he’s standing there waiting for me!” sheexclaimed.Although she seemed less anxious, the nurse observed

that the patient was still agitated and distressed becauseshe could no longer take charge of renovating the familyhome. The nurse recognized that the patient would notfind peace until this was taken care of. She thereforecontacted the social worker, who organized the patient’sfamily and friends to finish the home:

“She still worried about her family because she wasgoing to die from her kids. So in this case, unburdeningher with the practical stuff was an important part ofspiritual care.”

The nurse relieved some of the patient’s death anxietyby sparking her hope of reconnecting with her diseasedfather. By intervening to fix her house, the nurse helpedthe patient to maintain her family role and responsibil-ities the rest of her life.The complexity of identifying and alleviating spiritual

and existential suffering was also elucidated in a narra-tive about a patient who believed that God was usingher illness and pain to punish her. In this case thenurse had to deal with the patients’ religious issues be-fore she could relieve her physical pain. Desperatelysearching for a way to reach in to the patient, it sud-denly dawned on her that she could use prayer “to turnthe situation around”. So she asked if the patientwanted to say the “The Lords Prayer” with her. Accord-ing to the nurse, sharing the prayer helped her to con-nect with the patient. This opened up a naturalopportunity to talk with her about her picture of a pun-ishing and vengeful god:

“That was the first time I had been so frank with herabout religion. I sat by her bedside after the prayer,and we talked a lot about why she thought God wasusing cancer and pain to punish her.”

Although the nurse claimed she was not “very reli-gious”, she shared her belief in a trusting and lovingGod:

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“The God I believe in loves us and wants to help us!And now I can help you to take your pain away, − atleast some of it! - If you’ll let me!”

By praying with the patient and addressing herreligious distress, the nurse managed to obtain thepatient’s permission to alleviate her physical pain.The nurse reflected that it was only after theyhad prayed together that the patient’s attitudechanged:

“I really believe that when she experienced that I tookher spiritual pain seriously, she also became willing tolet me alleviate her physical pain.”

After that the patient allowed the nurses to give hermorphine regularly. According to the nurse, the patientdied pain free and at peace with her God!

Conveying consolationThe nurses’ narratives tended to evolve around theirefforts to help their patients achieve peace andtranquility. The nurses strove to help patientsaccept death, settle their practical affairs andachieve reconciliation with their past, their lovedones, and with God. The nurses felt that they hadbeen able to convey consolation when they saw thattheir efforts had helped patients to experience agood, peaceful and harmonious death. This was ex-perienced as very rewarding and fulfilling. Bearingwitness to the peaceful passing of a patient was de-scribed as a special moment that filled them withreverence and awe:

“The room was very quiet and the patient died calmlyand peacefully. It was a very special moment.”

The nurses could become deeply touched and amazedwhen patients shared their trust and openness:

“Sometimes I’m really astonished, that they choose toshare their troubles and worries with me! Even thoughI’m their nurse, I ‘m still a stranger!”

The nurses said they felt honored when patients choseto confide in them.

Emotional challengesHowever, being the patients’ confidant could also beemotionally draining:

“I can become very overwhelmed when patients sharetheir innermost thoughts and feelings about life anddeath! It almost knocks me out sometimes!”

Bearing witness to younger patients deaths could makethe nurses feel vulnerable, especially when they identi-fied with their patients:

“One of my patients had a little baby. That was reallytough, because I am a mother myself!”

The nurses experienced that their greatest emotionalchallenge was to endure being with patients who continuedto radiate anguish, protest and denial in spite of the nurses’efforts to console them. These encounters activated theirfeelings of professional helplessness and inadequacy:

“A young cancer patient anxiously battled death tillthe bitter end. All of us thought it was terrible, theway he died! We really tried, but nobody could helphim find peace because he simply refused to die! Wesat there holding his hand and listening to him. But hewas completely inconsolable! It was very, verychallenging and frustrating, even though we know thatwe probably did all we could!”

The nurses reflected that their reactions stemmedfrom the need to see results from their work and to beable to feel that they were good nurses:

“I guess we react like this, because it’s more rewardingto help patients and their families to find peace thanit is to cope with angry patients who protest and refuseto accept their situation”.

Occasionally patients and families threw their angerand frustration at the nurses: “We sometimes get a lot ofverbal abuse that can seem extremely unfair”. Althoughthe nurses understood that patients and family membersvented their pain and suffering by taking it out on them,they still experienced that this could be emotionallychallenging. Nevertheless, the nurses emphasized thatthey were obliged to alleviate the patient’s and thefamily’s distress as best they could:

“Then we have to stop and think: It’s usually neithertheir nor our fault. We have to remember that theyare in a very difficult situation. After all they arestruggling with the existential questions of life anddeath. So of course it’s difficult for them!”

The results reveal that the nurses yearned to conveyconsolation and found it difficult to accept that this wasnot always possible: “As nurses, we’re very into problemsolving and we really want to “fix” the patients’ prob-lems.” On an emotional level, the nurses tended to feelthat they had not done a good enough job when they ex-perienced that they were unable to help their patients

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find peace and reconciliation in the final stages of dying:“It’s very hard for us to accept that we can’t solve people’ssuffering!” However, on a rational level, the nurses ac-knowledged that it was necessary to accept that theycould not console everybody. Drawing on this insight,the nurses emphasized that conveying consolation byjust being willing to be there, to share the patients’ suf-fering was more important than trying to resolve thepatients’ spiritual and existential distress:

“We can’t solve everybody’s problems. There is such athing as pointless suffering! We have to accept thatthings don’t always have a deeper meaning.”

Emotional containersThe results show that the nurses had an important func-tion as “emotional containers” when they listened andencouraged patients and families to vent their thoughtsand feelings:

“It doesn’t do any harm if people start to cry. I usuallytell my patients that they don’t have to feel ashamedof their tears. Tears are only melting ice! ”

However, the results also show that nurses could bereluctant to take on this containing function becausethe patient’s distress exposed them to their own anxietyrelated to suffering and dying. In the nurses’ experi-ence, older nurses seemed to be more willing to engagein the patients’ spiritual and existential distress thantheir younger colleagues. They assumed that the oldernurses' personal and professional life experiences hadmade them more robust to bear the weight of the pa-tients’ distress than the younger nurses. The nursesemphasized that conveying consolation and containingother people’s emotions demanded personal courage,maturity, and a will to be touched by the patients’ tearsand emotions:

“You have to come to terms with your own thoughtsand feelings about your own vulnerability to endureworking here over time. It’s a demanding job! Not allnurses are cut out to care for the dying!”

In the nurses’ experience, what patients needed mostwere nurses who were willing to endure and stand bytheir patients showing that they would not abandonthem in their time of need:

“When I saw that her time was running out, I told mycolleague that I was going to stay with her. I just satthere holding her hand, and occasionally stroked herhair and her forehead. Sometimes I murmered a fewwords to let her know that she wasn’t alone.”

DiscussionIn this study the nurses narrated about their experienceswith spiritual and existential care for dying patients in amedical and oncological ward in a general hospital.Three themes emerged through the interpretation of theresults: Becoming ready for consolation, Non-doingpresence, and Finding the zone of middle engagement.According to the results, the nurses experienced that

patients’ spiritual and existential suffering emerged assubtle and elusive entanglements of physical, emotional,relational, spiritual and existential pain. The nurses sawthat patients could need help to alleviate death anxiety,achieve peace and reconciliation with God and/or family,settle practical affairs and unfinished business, set theirhomes in order, and resolve family conflicts and worries.These results are supported by Steinhauser et al. [4] whofound that resolutions within the biomedical, psycho-social or spiritual domains of patients’ experiences oftenproceeded their subjective experiences of peacefulnessand that peacefulness was often related to an antecedentbroader theme of “completion” or life closure.Some of the results will be discussed in light of the

work of Cassel [49] and Norberg et al. [50] who statethat suffering can be understood as a kind of alienationand a threat against a person’s sense of identity, integrityand connectedness. According to Norberg et al. [50]consolation is needed when a human being feels alien-ated from him or herself, from other people, from theworld and from his or her ultimate source of meaning.Furthermore, Norberg et al. [50] point out that consola-tion can be understood as a form of healing that involvesa changed perception of the world in suffering persons.This healing shift of perception enables suffering pa-tients to set their suffering within a new pattern ofmeaning, in a new transcendent light. Quoting the exist-ential philosopher Søren Kierkegaard, Norberg et al. [50]declare that:

“it is in the fearful moment of desolation, when there isno meaning left, that a brave statement of consolationpenetrates the darkness and creates new meaning.This happens on the boarder where nothing is possibleanymore.”

This is illustrated in the nurse’s narrative about theyoung woman who feared that she would disappear intoa black hole when she died. By sparking the patient’shope of reconnecting with her loved ones, the nursemanaged to help the patient to shift her perspective ofdeath. This enabled her to transcend her dark fear ofslipping into the black hole of oblivion.In the narrative about the patient that thought God

was using her illness to punish her, the nurse was ableto help the patient change her perception of a wrathful

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and avenging God to a loving God that cared for her.In both of these narratives the nurses were able to con-vey consolation by helping their patients to transcendthe isolating loneliness of spiritual and existentialsuffering.The results show that the nurses experienced that they

had been able to convey consolation when they observedtransformations in the patients’ demeanor, − shiftingfrom states of physical and emotional restlessness, painand anxiety, towards states of peacefulness and tranquil-ity. The nurses observed that such changes took placewhen they had been able to unburden some of the pa-tients’ most pressing sources of anxiety and distress. Thenurses’ emphasis on helping their patients to achievepeace, reconciliation and harmony in the final stages ofdying can be understood in light of the early hospicemovement’s “good death ideology” where open commu-nication, relief of symptoms, individual dignity and re-spect and acceptance of death are prominent features[1]. According to Costello [1], the hospice movement’s“good death ideology” has been sustained from trad-itional times to post-modern society and still permeatesmany aspects of contemporary palliative care. Costello[1] points out that “good deaths” are often sentimentallyidealized as being personal and individualized, evokingimages of death as peaceful, natural and dignified. Anumber of studies indicate that the fewer difficulties pa-tients experience in their passage towards death, thegreater the likelihood of the death being positively per-ceived by the nurses, whereas “bad deaths” had the po-tential to cause trauma and a sense of crisis for dyingpeople and others. “Bad death” experiences were oftenreferred to as “traumatic, chaotic or gruesome” by thenurses ([1] p. 595).As mentioned earlier, our results show that conveying

consolation in the final stages of dying could be an emo-tionally challenging and complicated endeavor, whichwas particularly revealed in the narrative about theyoung cancer patient who protested and fought againstdeath until the bitter end. The nurses’ reactions areunderstandable in light of the hospice movements “gooddeath ideology”. Palliative care practice has been heavilyinfluenced by this ideology and maintains a normativeand strong emphasis on the significance of wellbeingand a “good ending” which involves diminishing anxietyand facilitating a sounder grieving process, for patientsas well as their families, and of staying connected andreconnecting with “lost” relationships [1, 51]. Taking thisinto consideration, it seems reasonable to believe thatthe nurses considered the dying young man’s resistanceas a “bad death experience”:

“All of us thought it was terrible the way he died! Hewas completely inconsolable! It was very, very

challenging and frustrating! – even though we knowthat we probably did all we could!”

Torjuul et al. [52] point out that suffering is not amorally neutral phenomenon. Rather it is perceived andjudged as something that should not be there andawakens the immediate response in nurses to alleviate it,ameliorate it and prevent it whenever possible:

“The ultimate purpose for health care personnel is tocombat and alleviate suffering and that clients andfamilies should experience as little suffering aspossible” ([52] p.529).

In light of this ultimate purpose it is understandablethat the nurses yearned to convey consolation in orderto help their patients to achieve a peaceful, uncompli-cated and harmonious death. However, according toNorberg et al’s [50] consolation model both nurses andtheir patients must become ready for consolation.Nurses become ready to convey consolation throughtheir willingness to see and listen to the suffering pa-tient. The patients must reach a state of openness wherethey are willing to endure the pain of exposing their feel-ings of desolation and despair.Our results imply that some patients may never reach

this state of openness because they are unable or un-willing to surrender their protective shield and face thepain related to their impending death. This poses anethical challenge for the nurses. In their eagerness toconvey consolation, nurses are at risk of violating theirpatients’ autonomy due to the asymmetrical nature ofthe nurse-patient relationship. Although Norberg et at[50] state that it is beneficial for patients to “uncoverand look at their wounds”, patients’ resistance to do socan also be understood as a coping strategy they needand choose:

“While the truth is desirable, denial is not necessarilya negative mechanism, but can be a gradual means ofcoming to terms with the situation. It is a healthyreaction, allowing the person time to adapt and laterdraw on defense mechanisms” ([53] p.208) quoted inZimmerman [54].

It is reasonable to assume that nurses may be at riskof tearing off a much-needed protective scab of denialif they are too forthright in their questioning. Thenurses in our study were concerned about obtainedpermission before they asked sensitive questions relatedto the patients’ thoughts and feelings about theirimpending death. However, given the asymmetricalpower structure in the nurse-patient relationship it isquestionable whether or not vulnerable patients are in

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a position to deny their nurses such permission. Hence-forth, a major challenge related to conveying consola-tion, is to resist the temptation of imposing well-meantinterventions on patients. The nurses must therefore beable and willing to “walk alongside the patient” [50].Although sharing the patients’ suffering in a “presencingand non-doing fashion” may be emotionally challen-ging, nurses must put aside their personal needs toconsole patients who are not ready to receiveconsolation.This is in line with Back et al’s [8] research. They

point out that the danger of being unaware of feelinghelpless or being unwilling to experience that one feelshelpless may bias the clinician’s attention. Clinicians inthe grip of helplessness are likely to proceed with aconstricted view of the patient’s situation meaning thatimportant facts will be missed and conclusions drawnprematurely. As a consequence the patient’s views,values and stories will be insufficiently seen and maydistort palliative care into a series of medical treat-ments and procedures.In order to sustain their ability to convey consolation in a

non-doing, non-invasive manner Back et al. [8] suggest thatclinicians must learn to reframe their experience of help-lessness from one of “being at the end of the road to beingin a moment of relationality with the patient” , and theyargue that re-experiencing helplessness as a moment in aclinician-patient relationship can enable the clinician toshift to a middle place between a "hypo-active engagement"(characterized as a resigned, passive and apathetic state)and a "hyper- active engagement" (characterized by an anx-ious, pressured, vigilant, even desperate state). Back et al.[8] hypothesize that there exists “a middle zone of engage-ment” which they describe as the “zone of constructiveengagement”.Working in this zone clinicians are willing to put in a

cognitive, emotional and spiritual effort that goes beyondthe guidelines of professional competence. When cliniciansare working from their constructive zone they are able toevaluate the situation for what it is, empathizing withoutgetting overwhelmed, drawing on their wisdom and expert-ise while at the same time experiencing moments of effect-iveness and moments of disappointment. According toBack et al. [8] “the zone of constructive engagement” is not astatic state, but a range of possible experiences that reflectsthe dynamic nature of clinical work. Back et al. [8] statethat reframing helplessness enables clinicians to reframevulnerability from being “a soft underbelly” that must behidden and protected to an essential connection with thetragedy and fragility of being human. This is in line withour results. As one of the nurses put it:

“You have to come to terms with your own thoughtsand feelings about your own vulnerability to endure

working here over time. It’s a demanding job! Not allnurses are cut out to care for the dying!”

The results in our study show that the nurses fluctu-ated between all three states of "hypo", "hyper" and"constructive engagement". The following quote can beinterpreted as an experience of "hypo-engagement":

“I can become very overwhelmed when patients sharetheir innermost thoughts and feelings about life anddeath! It almost knocks me out sometimes!”

On the other hand, the nurses’ needs to see resultsfrom their work and to feel that they were good nursescould drive them into a state of “hyper-engagement":

“As nurses we’re very into problem solving and wereally want to “fix” the patients’ problems”.

Back et al. [8] point out that how nurses respond totheir own helplessness is likely to shape the suffering oftheir patients. Although the nurses expressed ambiva-lence, the results also show that they had the courageand willingness to enter into the middle zone of con-structive engagement when they functioned as “emo-tional containers” listening and encouraging theirpatients and families to vent their thoughts andfeelings.Our results show that the challenge of consolation is

related to the nurses’ unavoidable experience of helpless-ness in the presence of dying patients’ existential andspiritual suffering. Yet human beings are not only pas-sive perceivers in the context of social interactions. Backet al. [8] point out that human beings are also active crea-tors of shared emotional experiences in line with Norberget al’s [50] work. When the nurse and the patient be-come ready to give and receive consolation at the sametime, they are in a state of communion where mutualconsolation may take place. The patient may draw con-solation from the nurses’ presence and the nurse maydraw consolation when he or she experiences that thepatient is able to move from a state of anguish, suffer-ing and distress towards a state of peacefulness andtranquility [50].

ConclusionAlthough spiritual and existential suffering at the end oflife cannot be totally alleviated, nurses may ease some ofthe existential and spiritual loneliness of dying by stand-ing with their patients in their suffering. Further re-search (qualitative as well as quantitative) is needed touncover how nurses provide spiritual and existential carefor the dying in everyday practice. Such research is an

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important and valuable knowledge supplement to theor-etical studies in this field.

Competing interestsThe authors declare that they have no competing interests.

Authors’ contributionsKT, VS, and LJD designed the study.KT collected the data, transcribed the interviews and drafted the manuscript.KT, VS, LJD, KK contributed to the interpretation of the results and criticalreview of the manuscript. All authors read and approved the finalmanuscript.

Authors’ informationKT, PhD. student, MF Norwegian School of Theology and Center for thePsychology of Religion, Innlandet Hospital Trust, Norway, RN., RNT., AssociateProfessor, Lovisenberg Diaconal University College, Norway.LJD Professor, Dr. Theol., MF Norwegian School of Theology, Director of TheCenter for the Psychology of Religion, Innlandet Hospital Trust, Norway.KK Professor, PhD., RN., RNT., Department of nursing, Faculty of Public Health,Hedmark University College, Norway and Department of nursing NesnaUniversity College, Norway.VS Professor, PhD., RN., RNT., Lovisenberg Diaconal University College,Norway.

AcknowledgmentsThe authors are grateful to the participants in the study.

FundingThis work was funded by Lovisenberg Diaconal University College andInnlandet Hospital Trust (grant number 150247).

Author details1Lovisenberg Diaconal University College, Lovisenberg gt. 15B 0456, Oslo,Norway. 2MF, Norwegian School of Theology, Gydas vei 4, Majorstuen 0302,P.O. Box 5144, Oslo, Norway. 3Religionspsykologisk Senter (Center for thePsychology of Religion) Innlandet Hospital, P.O. Box 68 2312, Ottestad,Norway. 4Department of nursing, Faculty of Public Health, HedmarkUniversity College, P.O. Box 400 2418, Elverum, Norway. 5Department ofnursing Nesna University College, Nesna 8700, Norway.

Received: 14 May 2015 Accepted: 19 November 2015

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